There Are Worse Things Than Death
4) There Are Worse Things Than Death
Voldemort : “You do not seek to kill me, Dumbledore? Above such brutality, are you?”
Dumbledore: “ We both know there are other ways of destroying a man, Tom. Merely taking your life would not satisfy me, I admit.”
Voldemort: There is nothing worse than death, Dumbledore!”
Dumbledore: “You are quite wrong. Indeed, your failure to understand that there are things much worse than death has always been your greatest weakness.”
Voldemort and Dumbledore from Order of the Phoenix
We say that we value human life. That premise is used as an argument to forstal death at all costs, economic, physical, emotional and spiritual. It is amazing what we can do to keep physical death at bay. As a critical care nurse, I have participated passionately in doing unthinkable things to/for patients, things that are far worse than death in service of valuing human life. I, as all good critical care clinicians do, learned to compartmentalize and manage the moral distress brought about by the horrors we inflict on patients. I also took great pride and derived a sense of humbling power from the skills that I developed that could bring vital signs back to a point that could sustain life. Buying time for the body to heal, or not. It may seem a noble cause to declare that we value human life above all other values but what is a life and what are we valuing? Physical life is no more than the physical vital signs that can be measured. The beating heart, the brain that functions above the level of the brainstem where natural life can be sustained without artificial means of support. The value of life is derived from the experiences perceived by the individual. Only the individual can decide for him or herself if what is being experienced is of value to them.. Those experiences can be conscious or subconscious. There is no question in my mind that we all share a universal energy that operates at a subconscious level however we all have differing levels of awareness with those subconscious influences therefore they may not become part of our conscious experience. Again, the value of those experiences are only up to the individual to decide.
Where have you found meaning in your life? What experiences bring value to your life? What experiences would you not be willing to live without? These are important questions to ponder as you proceed on your journey to take ownership of your health care decisions. When making decisions with that much gravity it is important that you are aware of mindsets that can influence your perspective. Viktor Frankl Austrian psychiatrist, author and great thinker was imprisoned in Nazi concentration camps for 3 years, lost his entire family, had his lifes work up to that point taken from him and suffered the daily indignities of being imprisoned in concentration camps. He attributes his survival to a psychotherapeutic method that he developed and is explained in Man’s Search for Meaning. “Meaning therapy” which is based on the premise that humans can overcome suffering and endure by finding meaning and a sense of purpose in every moment. Frankl’s thoughts are worth considering when you are considering where to draw the line regarding medical treatments. Here are a few: “Everything can be taken from a man but one thing: the last of the human freedoms-to choose one’s attitude in any given set of circumstances, to choose one’s own way”. We will all face some decline in our physical abilities and some may face some cognitive decline. As we get older, our attitudes may need to change regarding our limitations. What we say we would never tolerate at age 20 may look completely different at 60,70 or 80. ”The primary motivation for living is to find meaning,” In what things in your life do you find meaning right now? There is always the possibility to change your path to one where you find meaning and purpose. There is also the possibility to find meaning in any moment if you still have the capacity. “In some way, suffering ceases to be suffering at the moment it finds a meaning, such as the meaning for sacrifice.” If you find yourself suffering through cancer treatments and the burden is getting heavy, remind yourself why you are going through the treatments. That may give you the meaning to go on and you may see your suffering transform. The question is, can you find meaning in your current reality. If there is meaning and a purpose, by all means, continue on. If you find that the meaning that you ascribed to your labors is dissolving and you have come to accept your fate, you can find a new purpose. A purpose to control how you exit this life. To succeed at that noble goal you will need support. You must feel comfortable that you have an off ramp. This is why it is helpful to discuss these contingencies in advance with your loved ones. Our culture puts so much pressure on patients with terminal conditions by the value we place on being a fighter. I would like that phrase struck from our culture, but more about that later. Make sure that you are choosing to run your own race or that you are fighting your own fight
Frankl suggests three ways of finding meaning 1. Giving or contributing something to the world. How could you cultivate this over your lifespan? What would you like to give when you are dying? Would that not give you a purpose? 2. Experiencing something or encountering someone. Would practicing being present in every moment have the benefit of bringing richness to every experience? How might you cherish every experience, positive or negative? 3. Choosing a courageous attitude towards unavoidable suffering. Are you able to admit that you have fears? This is one of the best ways to jumpstart a courageous attitude. These are practices to develop and nurture now and as you age to ensure that meaning can be found as you change and your circumstances change.
As you head down the path of considering what circumstances you would not tolerate and what medical procedures you will refuse or demand, keep in mind that we are evolving. We can form some firm opinions as we experience what life can dish out. I have heard several nurses and a few physicians say that they want “DNR” (Do Not Resuscitate) tattooed on their chest so that if they ever cardiac arrest and someone attempts to perform CPR they will see their advance directive tattooed there for the world to see. They have seen enough resuscitation attempts with poor outcomes, they know what they don’t want. I would like to caution you to keep in mind that we are generally pretty bad at predicting our future emotions based on our current opinions and perceptions.. Predicting future emotions is called affective forecasting. People making health related decisions are particularly vulnerable to a few forecasting errors. 1) Focalism: Patients tend to focus heavily on what will change as a result of a medical procedure such as a reduction in mobility, becoming saddened by it and ignoring the many aspects of their life that will stay the same. 2) Immune of Psychological Immunity: Patients tend to underestimate the extent to which their coping mechanisms will protect them from enduring emotional suffering, such as a sense of humor and the ability to intellectualize in the face of a bad situation. 3) Failure to predict adaptation: Patients tend to underestimate or be unaware of the human tendency to adapt and return to baseline levels of happiness following challenging events(16). Now that you have been given a framework, some tools and cautions to consider as you proceed to take ownership of your decisions, let's really look at things that can be far worse than death.
The first thing that is worse than death is being a loser. Using the term“fighter” as a metaphor for facing a terminal illness is the single most powerful construct obstructing the acceptance of our own mortality for the patient with a terminal diagnosis.. What are you when you choose to stop chemotherapy for a cancer that is clearly winning? A loser. At least that is what is implied. No polite person would say that out loud, but this binary way of looking at our approach to treating terminal illness has consequences. The patient with terminal cancer who is hospitalized because the chemotherapy is making them so sick that they cannot spend time with their family is thinking, I just want to be with my family but if I stop the chemo they will think that I gave up, or worse. I am a loser. I once cared for a priest who was waiting for a third liver transplant. You heard that right. The first liver he received was rejected by his immune system. The second liver was being rejected and instead of surrendering to his fate and joyously welcoming the fact that he would meet his maker, he was pursuing a third liver transplant. In an effort to allow him to express himself, I had to ask him how he felt about his odds of surviving(which were pretty low). He was clearly exhausted but he told me that he had to continue to fight. He expressed gratitude that he benefited from the loss of two people’s lives. Here is a man who believed that he was promised a reward in heaven and was more influenced by how he would be perceived on this earth. Perhaps he found some purpose in his fight but at the time. Perhaps he was obeying a religious directive to preserve life. Or maybe his physician just put him on the transplant list because transplant surgeons don’t like to give up. I don’t know but I felt so sad for him because he was clearly not at peace. To me being weighed down with the fear of death and of being perceived as a loser is far worse than death.
Now that I got my pet peeve out of the way, let's look at some very pedestrian conditions that many would consider to be far worse than death. Researchers at the University of Pennsylvania conducted a study consisting of patients with varying diagnosis from advanced heart failure to malignant cancers. There were 180 participants who were asked to rank conditions or situations that one might experience at the end of life as being better than, the same as or worse than death. None of the patients experienced any of the conditions or situations so I believe that the errors caused by affective reasoning are at play here, as they would be with any of us who have not had the experience. 70 percent cited bowel and bladder incontinence as being as bad as or worse than death. In addition, reliance on a breathing machine(ventilator) and inability to get out of bed were cited by 70 percent of patients as being as bad as or worse than death. 60 percent of participants cited being confused all of the time as being as bad as or worse than death. 55 percent said being reliant on artificial feeding(feeding tube) was as bad or worse than death. Being reliant on around-the-clock care was cited by over 50 percent of respondents (17). I said that these were pedestrian examples of conditions that would be far worse than death because if you walk into any intensive care unit right now you will find any number of patients who are experiencing one or more of these. The fact that none of the respondents in the study experienced any of the conditions weighed against how readily people actually tolerate these states highlights how affective reasoning works. Or, do we really not want to tolerate such indignities but just don’t plan? Could having a plan and not having that plan followed be worse than death?
In my career I have witnessed and participated in, with every fiber of my being, with only the most honorable intentions in what can only be described as socially sanctioned torture. I have carried on with the plan even when patients have begged me to stop. Mind you, I advocated for that patient passionately but until family and the medical team were on board with the patient's wishes I stayed faithful to the plan. It may seem unthinkable, even illegal that we would go against a patient's stated wishes. It happens all of the time. A patient with no written advance directive declaring what care they want or don’t want may present with some alteration in mental status and we don’t trust what they say as what they really mean. The next of kin is making decisions and our healthcare system defaults to doing everything because no health care provider wants to be accused of not providing adequate care. Providing care against patients stated wishes even happens when patients have completed advance directives. There have been several lawsuits alleging that patients were harmed by unwanted care because their end-of-life wishes were disregarded by the clinical team. One specific case in Georgia was awarded a $1 million settlement against the hospital. A 91 year old woman presented to the ED, advance directive in hand, indicating her end-of-life instructions. In addition, her granddaughter stressed to caregivers that no heroic measures were to be taken. Despite those efforts the woman was intubated and operated on, and the family sued the hospital.(15) This can happen when an advance directive is not added to the chart and when an appropriate conversation clarifying a patient's wishes is not completed before care is delivered. It cannot be stated forcefully enough that if you took the time to plan, you must make sure that everyone on the treatment team knows the plan. This 91 year old patient survived the ordeal only to die on another day. I can imagine the screaming going on in her head. Surely being treated when you don’t want to be is far worse than death. What else could be worse than death?
How about not being told that you are dying.This point was illustrated in Tolstoys Ivan Ilyich. We do have a strong culture of denial of death and that runs deep in some cultures and families. Not being told that you are dying and not being allowed to say that you are dying robs you of the option to do the work to wrap up your life. Some like to pass on wisdom or resolve relationship issues but these options are taken from patients. I believe patients know when they are dying but when not given the permission to speak about it and have their fears allayed has to be one of the saddest horrors. I was once involved in caring for a young patient in her 20's, let's call her Ann. Ann had a mixed connective tissue disease. In connective tissue diseases, your immune system attacks the ligaments and tendons and other tissues. It is extremely painful with many complications that ultimately lead to death. Well, Ann’s mother would not let us tell the daughter that she would die. Mom fervently believed that God would save her. We cared for Ann for months and the entire staff was afraid of the mother. She was demanding and mean I cannot express enough how much everyone was afraid of this mother. I remember the night she died like it was yesterday and it was quite a while ago. Ann had decompensated and was very unstable and near death. We were doing everything we could but we knew that she was going to die. I was the charge nurse that night and I went to her mother, who was in another room. I knelt in front of her and with tears running down my face I begged her to go tell Ann that she was dying and give her permission to let go. My pleas worked, Ann died with family and staff around her. One of the most horrific experiences in my life and I can only imagine how terrifying that must have been for her. Certainly the months of suffering that she endured, not being allowed to share her feelings had to be far worse than death.
How about ending up in a nursing home where the“ elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about” Atul Gawande, Being Mortal: Medicine and What Matters in the End. There is little hope of maintaining any purpose or meaning. If you have means, you may buy yourself into a high end assisted living where you start out independent and take on assistance as you need. If you are educated and have those means you are more likely to enter into hospice and get the care you need at the end of life.
If you don’t have means and you did not plan, like so many, you may find yourself in a condition where you cannot return home because you need around- the-clock care. Unfortunately, most of us accept end-of -life care that is inconsistent with our stated wishes. Approximately 80% of Americans report that they would prefer to die at home if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home(14). We are failing at making sure our final wishes are honored. If this seems worse than death to you then you better get planning.
There are so many more things that are worse than death and I encourage you to consider what you do not want to endure. It is your choice, your statement. Make sure you give yourself room for your plan to change. I support addressing your values, your “why” on what you would want or would not want in your plan. More about that in part 2 of the book. Before we get to planning we have one more obstacle/excuse to cover. How do your spiritual beliefs inform your decisions around end-of-life care?